Exploring Empowerment in Online Support Communities for People Living with Tic Disorders and Tourette Syndrome: Qualitative Online Survey of User Experiences

Background:

Although tic disorders (TDs) such as Tourette syndrome are relatively rare, they can have a significant impact on those living with TDs, who report lower quality of life compared to the general population and experience considerable difficulties including societal stigmatization, and barriers to accessing healthcare and pharmacological or behavioral interventions. Peer support can help improve psychological outcomes for this group, and online support communities (OSCs) have been suggested as a novel way to access this support. Empowerment involves improving an individual’s cognitive processes to increase their ability to be in control of their lives and condition. OSCs have been suggested to facilitate empowerment but this has not yet been investigated in a TD population.

Objective:

The objective of this study was to explore the presence and types of empowerment processes and outcomes perceived and reported by users of OSCs for TDs who are living with a TD.

Methods:

Current users of OSCs for TDs responded to an online survey, which included free text questions about the impact of using OSCs for TDs in relation to empowerment. Survey responses were analyzed using deductive and inductive reflexive thematic analysis.

Results:

Thirty-nine participants completed the online survey. A range of empowering processes were identified including exchanging information, encountering emotional support, finding recognition, helping others, sharing experiences, and changing stereotypes and stigma. Multiple empowerment outcomes including being better informed, feeling more/less confident in the relationship with healthcare professionals, enhanced acceptance, self-esteem and mental well-being, feeling more confident about treatment decisions, increased control over the future, enhanced social well-being, raising awareness and ‘one size does not fit all’ were identified. A small number of disempowering processes and outcomes were also identified from participant responses.

Conclusions:

These findings contribute to evidence for empowerment experienced by users of OSCs and consider processes and outcomes unique to people with TDs and how these affect their experience living with a TD.

https://preprints.jmir.org/preprint/66912